I’m gonna rain on everyone’s parade today. I know I sound all super negative these days–maybe it’s having had so much disease progression, maybe it’s feeling like crap from chemo…or maybe it’s just that after over a year of living with metastatic breast cancer, I’ve stopped being polite and started getting real.
If you’ve been reading my blog for a while, y’all know that metastatic breast cancer is incurable. Sure sure, we all hope research will swoop in and save us, and exciting breakthroughs make headlines every day, yadda yadda yadda. Except, we’ve heard about exciting breakthroughs lots of times over the years, and yet, the average lifespan with MBC remains 2-3 years. So, let’s face the reality as it stands today: I will die of or with my disease. (And MBC isn’t the only cancer that falls into the incurable cancer category–many cancers have even worse average lifespans than MBC, and with even less research dollars than us breasties get.)
Which brings me to the topic of this post: the word “survivor.” People always ask me why I don’t like that word, and why I don’t call myself a survivor. Lots of folks don’t understand why it’s such a loaded word for many metsters, why it makes us feel so excluded from the broader cancer community that has a legitimate chance of living a full lifespan and dying of something other than cancer. I can’t speak for everyone, because we all come at these issues a little differently, but I can explain where I personally am coming from.
Let me use an analogy, because y’all know I love analogies. Say you’re in a plane crash, but you don’t die instantly–instead, you linger on in a coma for a day or two, and then you die. Would you say that you survived the plane crash? Of course not, because you died. That day or two of suffering from your injuries doesn’t change the fact that the plane crash was the cause of your death. You didn’t survive that plane crash, you died from it. It killed you.
Or how about another analogy: my grandfather served as a bombadier in the Korean War, but he died when his plane went down during a bombing mission. Would we say he survived the war? Of course not, he died in the war. That he flew quite a few missions before he died doesn’t make him a survivor of the Korean War.
Well, that’s what metastatic breast cancer is like. We might not die right away–we might suffer through treatments for a while, but eventually, nearly all of us will die of our disease, and 100% of us will die with our disease, because it is incurable. So, how can I be a survivor of cancer? I can’t, of course. How can you survive something that will eventually kill you?
For me, hearing the word survivor is a constant reminder that I’m different from non-terminal folks. It’s a button that people push, a button that says “That will never be you. You’re going to die.” I don’t really enjoy thinking about my death if I don’t have to, so I wish people would stop reminding me of what will never be. I will never be cured. I will not survive my disease. And you’d be surprised how often you see the word “survivor” in cancerland. Yesterday was some sort of national survivor day, and I know of two cancer conferences that happened over the weekend with the word “survivor” in their name. I didn’t attend either of these conferences. Just hearing the title of them turns me off and makes me feel like they aren’t for me.
What word do I use instead? I usually call myself a metster in the breast cancer community, and a cancer patient outside that community. I think some folks don’t like being called a patient because sometimes being a patient feels more like being an object than a person. But for me, I mean, it’s not like I can get away from the reality of treatment. I’m a cancer patient, and I will be until I die. What I’m not, and never will be, is a cancer survivor.
Shitty sleep, scanxiety, and ativan are a triple whammy of non-articulation, so I want to make this awesome, eloquent response to all your marvelous points and incredible analogies, because this post is amazeballs and totally deserves it. But all my brainmeats are capable of right now is picking out a macro.
Thanks for making me aware of so many topics that I’ve been oblivious about. And now I’m turning into a cancer cynic–last night at the Tonys, Rita Wilson had a message, “My thoughts are with you and I know it’s a truck that hits you, but I’m telling you, get through it, it’s a day at a time and I’m praying for you and I know I’ve been there and it will be good.”
I immediately thought of you and the other people that aren’t good after they go through it. Of course I know she was trying to give people hope but as I said, I’m now a cynic.
I read you because I heart you, and I heart you because you teach me so much. Whether you mean to or not, you educate me, and because of YOU, I always look at things from a different perspective. I appreciate you, friend. xo
WhenCrazyMeetsExhaustion recently posted…Hear Me Out!
Really appreciate your blog and totally agree with you. I am a person treated for cancer and currently NED. That’s it. I hate the whole survivor/fighter/warrior rat barf thing. No one wins. We don’t need to put ourselves in neat little boxes either. We need to be helping each other …. More research. Concentrating on survivors makes it too easy to forget those that don’t. My mom was a metser. She died nearly 25 years ago and people are still dying! I can’t forget and i can hardly even get the word “survivor” out of my mouth. Meh.
Thank you for your words.
Well said, again… I say I have terminal breast cancer. The truth is often glossed over, even in our world. Reality is what keeps me sane. Your analogies are spot on! xo
Carolyn Frayn recently posted…Life
I agree with you. Not a survivor either and I hate how the name of the day makes me feel. I am not up to writing much these days (just out of surgery and radiation for my brain) so I wrote a short post and linked to this one. Hope that’s OK with you. http://notjustaboutcancer.blogspot.ca/2015/06/others-eloquent-voices.html
That is so kind of you, thank you! Sending you lots of healing vibes!
I really liked your blog. And I dont blame you for feeling the way you do. It must be so annoying. People need to be educated that not all cancers are the same. And outcomes vary. At my first chemo session I met a lovely lady who had mets (i did not understand what it meant at the time) Of course now I feel very educated.
I never say I am a survivor to anyone even though in remission.
Lets hope some time soon Joe public will know about mets. Keep writing x
I am not stage 4 and still don’t like the label. It suggests something is finished and done. Who said we are ever completely finished with cancer? I certainly don’t feel finished and this reflects on the fact that I will probably never have my own children, for example. Of course I am grateful for still being NED but I still need to make life decisions based on the fact that I am a cancer patient. I don’t feel like a survivor because I am simply not done with cancer and never will be (in a different form than stage 4 of course, until something happens, then the form will change).
I wish there weren’t any labels. It separates us. Another reason why I dislike the word “survivor.”
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